Visiting Disney World With Type 1 Diabetes
This post was written by Jacqueline Clark, frequent visitor to Disney Parks and a member of the Moms Panel. Enjoy!
When our 11 year old daughter was diagnosed with Type 1 Diabetes (T1D) this past May, our world was forever changed. Type 1 isn’t the diabetes you hear about on TV. Type 1 is an auto-immune disease which requires round the clock monitoring. You can’t take a vacation from the constant managing of Type 1, but you can (and should) take your vacation to Walt Disney World!
A frequent visitor to Walt Disney World since the early 1970’s and a member of the Disney Parks Moms Panel, it has been a place of joy my entire life. Our 3 children first visited Disney World as infants and consider it their second home. So when our newly diagnosed daughter asked if we could go there after she was released from the hospital, I decided we would make it a fact finding trip. We needed to see for ourselves that Disney can continue to be our happy place with T1D.
Walt Disney World does a fabulous job with special dietary requests. Sadly, carb counts are not provided on the menus or by the chefs. Of course, any prepackaged foods will provide the necessary carb counting. If you are not familiar with T1D, it is necessary to count the carbs in the food you eat, every time you eat. After you “do the math,” you must bolus (take insulin) for the food you are about eat. Our daughter decided she would make a Diabetic Disney Guide (pictured). Thanks to the free wifi available across Walt Disney World property, we were able to Google and estimate the carbs counts for the any of the food she ate. Want to dose for a Mickey Bar? You’ll find the carb count for that right on the package. It’s 31 carbs. What about a churro? Good ol’ Google helped us find that it has about 24g of carbs. There are many restaurant chains who provide carb counts. I am hopeful that Disney will follow suit sometime soon.
On this first trip post diagnosis, we decided to stop by the First Aid Station inside Magic Kingdom Park. If you need First Aid, by all means go. You will find them near the entrances to each park. My advice would be to skip a trip there for Type 1 basic care however, and here’s why…
All they can really do is store your insulin and I really don’t think you’ll want to do that. Instead, invest in a Frio cooling wallet and you can keep your insulin with you at all times. You don’t want to have to trek across the park each time you need a dose of insulin. If you want a cool place to test, there are plenty of options around. Our endo recommended avoiding the bathrooms. Don’t be shy about grabbing a corner inside the lobby Mickey’s PhilharMagic, for example. There is no reason to go to First Aid to test. And if you do, they will ask you to go to an exam room for testing…not magical. Granted, if you are using a pump, you may find some value in having an exam room to change your infusion set. We are not there yet.
T1D is not something to be ashamed of and there is no reason to hide when testing your blood sugar or bolusing. Test when and where you need to do so. It’s important to test often because heat and activity can throw your blood sugar seriously out of whack. Keep a water bottle handy at ALL times. Dehydration will do a number on your sugars as well. Thrill junkie? Adrenaline can make the body resistant to insulin. If all the walking and bolusing gives you a “low,” don’t let it sneak up on you. When in doubt, check check check!
Packing!
As with any other vacation, I suggest you pack at least double the supplies you would normally need for your #T1Disney vacation. Split those supplies into 2 carry-on bags. That way if one gets lost, you still have some of the supplies you need. Remember to get a note from your endocrinologist for the TSA. This will allow you to bring “low” snacks like juice boxes, supplies and ice packs through security. Speaking of ice packs, you will need those to keep your unused insulin cold while you travel, so don’t forget that ice pack!
Tidbits
- Call Mousekeeping and request a sharps container. You can also request one at the front desk of your Walt Disney World Resort.
- Bring a measuring cup or two to better assist with carb counting. Walt Disney World sells these amazing ones with Mickey, Minnie and the Gang (pictured) that collapse for ease of storage in your bag.
- Bring double what you’ll need for the day in the parks. You’ll thank me after you’ve dropped an entire container of test strips.
- Consider obtaining a DAS “card.” (Disability Access Service). When heat and exercise wreck havoc with your blood sugars, which can be dangerous, this service allows you to wait in a cool or relaxing place of your choice. You are given a “return time” and can visit that attraction without waiting. Please DO use Disney’s FASTPASS service in combination with this.
- Remember to bring low snacks that won’t melt. Glucose tabs are our best friend.
- Don’t hesitate to speak with the chefs about your Type 1. Although carb counts are not readily available, the chefs were helpful with adjusting servings to include extra protein and lower carb foods.
- Search out fun places to relax like the Kidcot Fun Stops inside World Showcase at Epcot Theme Park. They’re for adults and kids of all ages who enjoy a break, Type 1 or not.
- Call your endo before you travel to Walt Disney World. He or she has the final say in your medical decisions.
Most of all, have fun on your #T1DISNEY vacation!
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Hi, I’ve been a type one diabetic since 1982. There is no comparison between type one and type two. They are totally different. One is a auto immune disease the other is not. As a type one I’ve learned that I can do anything. So take your kids everywhere, just be prepared for low sugars. Low sugars are the craziest thing in the world. Your mind can’t process things. It’s like being drugged up. Find a average you can live with that reduces lows and doesn’t leave hours upon hours of highs. Being over 250 for a hour or two will have no long term effect. Don’t over manage. The average I shoot for is 150. This keeps A1C’s in the 7’s. In my 30+ years of dealing with this condition I have no diabetic side affects. My eyes have never changed, my feet are good and all my labs come back normal. The most important thing is either get a CGM or check your sugar every 2-3 hours. Remember you body doesn’t know your diabetic so when you exercise your blood sugar can go up without eating. Your liver dumps sugar into your blood stream to supply your working muscles with energy. I play hockey every Friday at 6 am. When I wake up I check my sugar. It’s usually between 90-150. I usually take no insulin and eat no food before hockey and every time after hockey my sugar is 300+. I’ve tried taking my levimer before hockey. I’ve tried small amounts of humalog, although this makes me nervous because of a low. Also even with the humalog the sugar is still high after the skate. So the point is short high sugars have little effect on your future health. I’ve worked in the bush of Alaska, on fishing boats, back packed through out the US, played college hockey, play hockey three times a week, coach three days a week, ski 60 plus days a year, most in the back country, mountain bike 30-50 miles per week. So you can do everything. I would be lying if I said I never had a situation with lows, because I have. That’s just the reality of being a type one. Be prepared carry lots of quick sugars. Candy doesn’t work. I use apple juice, I have cliff blocks and jel packs in every pocket, every glove box, and every back pack. If you never have lows your always high.
That is so exciting! By the way, you finding and using Touring Plans is a sure sign that you have been on the right track so far. Touring Plans provides very honest and the most useful info!!! I would assume you are a subscriber and have the lines app on your phone? It is worth every single penny. And going with some experienced visitors will be helpful in steering your family and your vacation goals in the right direction. I imagine that when you get your first taste of “the World” you will be a little overwhelmed by the shure size. But rest assured that communicating and transporting is very very doable. In my experience Cast Members are there to help in every single way. They take a ton of pride in ensuring their guests have a magical time. So don’t hesitate to stop someone for help or to answer questions. And while this may sound like an extravagant idea, I would treat everyday, park, ride, show, as a big wonderful mass exploration test for a possible future visit in the years to come. You can gauge how much your family enjoys the Disney vacation and then plan accordingly for a potential future visit where your research and planning is based on what you all have learned. Disney is undergoing some extremely fun and hugely interesting changes and additions, I really hope to be able to go again, maybe a year or two after the 50th anniversary year.
As far as quick acting carbs, this is where for ME, if I want to use an insulin bolus to let’s say indulge in sharing a pancake side with my husband, I would make sure I eat egg and bacon with it. Not just the pancake. For me the fat and protein help the meal digest a little slower. Fast acting carbs can spike sugar quicker than complex carbs, but ALL carbs will spike your blood sugar level if not enough insulin is used to cover that meal. It is important to not over react to a high sugar test by bolusing too much insulin to bring it down. This is where the “crash” would take place. You are figuring out so many ratios at this time, such as how many carbs does one unit of insulin cover, how many sugar numbers does one unit of insulin bring down the number, and how long does the insulin bolused to cover a meal stay active in the body. And then on top of that activity level vs sedentary time needs to be considered. Personally, and this what I would do for ME, is while there is a window threshold that I want to ideally keep my blood sugar range in, and I do daily strive to keep that goal, I would feel OK to have my blood sugar a little higher than my goal on vacation. There are so many variables with the amount of extra walking and expending of energy that I would not want to risk going too low. Enevidably for ME when I have tried to have the strictest of goals on vacation and take more insulin to bring down a moderate high, I then go too low and have to eat another fast carb, even if I am not hungry. Hence then the rollercoaster begins. This is kind of difficult to explain via text/blog. I think the very best advice I have to give is to have your finger stick test kit at the ready and just test when you have a moment while waiting in line for anything at all. You, your son, family, and friends should understand the need for it, in the long run it will be worth it to forecast a potential negative event, and until your son gains experience with how he is feeling… it is the only way you and him will know.
Thank you so much for helping us think about these new considerations! It is our first trip, and we have 5 days scheduled in the parks (4 hoppers and 1 after hours event). We are staying in Disney Springs.
We are actually going with a larger group of 19, some of whom have been to Disney many times. My family of five had originally planned to just kind of just do our own thing and overlap a little, but since my original plans seem unrealistic (do as much as possible, rope drop certain parks), I had started considering just following around the more experienced Disney folks in our larger group. Then, I rethought the idea of sticking with the larger group, since we may will need to move at our own slower/different pace (and the big group might just make that more complicated & we wouldn’t expect them to keep waiting around).
Also, (a little off the specifically Disney topic, so no worries if I would be better to ask/seek this elsewhere) I’m still trying to clearly understand the effect of quick acting carbs. Do I have it correct that they tend to cause spikes and then “crash” into lows?
A few thoughts come to mind, but please, please understand that I am not offering medical answers, just some suggestions. I would ask my family to approach this vacation as a team, all on the same page of expectations. Disney is so amazing with all it has to offer but remember that literally NO-ONE can ever “do” everything during one single trip. So try not to feel like any of you are “missing out” if a goal of the day falls short. Whether starting off a trip with a new diagnosis or not, any vacation can go array mid-way for reasons from illness, injury, or weather, so consider it a blessing that you all know this diabetes part ahead of time :).
I would ask your family “team” to take it as a challenge to eat with a few considerations in mind. 1) Try to eat a protein while eating a carbohydrate 2) Many think of vacation as a time to indulge, but maybe exercise some thoughtful constraints at this time 3) Ask everyone to be willing to split and share meals and snacks, like an example would be “let’s get ONE cupcake and all five of us have ONE bite?” Disney meals and portions are very, very generous 4) Remember that even what is considered healthy foods like apple slice’s or yogurt’s carbohydrate count has the same effect on blood sugar levels as cotton candy’s carb count.
I don’t know where you are coming from, or how often your family gets to swim. And I don’t know what the pool will be like where you are staying. But I would be extra cautious during pool time. I feel swimming can really expend a ton of energy so watch for lows during or directly after. Or maybe even have everyone make a choice, like should we swim OR stay up late for fireworks? Trying to fit in all these options can be difficult to balance, and if you try too many in a row, and then let’s say put a timer on each activity, it might take the fun out, or it could be easy to just basically overdue.
Another thing is that based on the ages of members of your family, you should be able to do some split group stuff too, so that should help maximize everyone’s enjoyment and memories. (It is easy to get obsessed with the idea that everyone needs to everything together at every moment)
I have thought of a few other questions for you, 1) have you been to WDW before? 2) how many days are you staying? 3) on or offsite?. Again, these questions may seem personal, but it might help spark some better detailed advice regarding adjustments of daily plans.
One last thing, Type 1 diabetes, whether newly diagnosed, or on vacation, or just on a sunday afternoon mowing the lawn can give us some unexpected rollercoasters in sugar levels. Do not feel that any of you are failing if your kido has a high or low… this afternoon or at Disney!!! Try your best together, focus on making smart choices together and having calm reactions together.
Our Disney trip is scheduled for 2 weeks away from the day our son, just turning 7 today, was newly diagnosed with type 1. His endocrinologist says we can still go, but family members are warming me that we will regret going because it is “going to ruin what was supposed to be an amazing trip.” My husband and I think staying home would be so sad for our son, his two siblings, and us! We know we will need to adjust our expectations and take more breaks. Has anyone gone so close to diagnosis? Any tips on not feeling overwhelmed while we are there? Thank you!
Some of these questions might seem personal, but for me to help give you any guidance or support, I guess I need more info. One immediate thought that came to mind is how old are his two siblings? Are they older, and able to “help” you and your husband while traveling/touring? Or are they younger? Aslo, how many months or weeks has your son been newly diagnosed? My daughter recently participated in the Disney College Program and I was fortunate to have been able to visit WDW four times in one semester all the way from Montana, by both driving and flying. These recent trips gave me quite a bit of insight on Disney, travel and Diabetes. I can certainly empathize with your feeling overwhelmed, but ultimately your Endocrinologist is a professional and the medical team advice is the one I would follow with confidence. (I am the same Jennifer that posted above a few years ago on this original Blog)
Thanks for your response! Our other 2 kids are both older (10 & 19). We are supposed to leave for Disney two weeks from the day our son was admitted to the ER. As of now we are going to try and go. If you have any additional tips on what we might expect or how much you think I’ll need to adjust our (pretty packed) daily plans we would really appreciate it.
omg please GO you will learn, over time… that his diabetes just takes a little time to adjust to ! He can totally have an amazing time with your family. he may just have to watch his blood sugars more closely because of all the activity. keep extra sweets on you in case of low blood sugars. and snacks too. check his sugar every hour if running at a normal level when you get there. if it’s extra hot, stay hydrated… i was diagnosed at age 11 now 54, going to disney next month with my 2 year old grandaughter… you can have a very happy, fulfilled life, just different & thats ok 🙂
I have had Type 1 diabetes for over 20 years now. In the Spring of 2014 my family and I visited Disneyland over Easter week. I asked at Guest Relations for a DAS “card.” (Disability Access Service) and was turned away. They told me that they are unable to give out DAS for diabetic visitors. They said “the best they could do” was that if I needed to step out of a waiting line to “deal” with my diabetes was that a Cast Member would be able to help me re-join my family to the point that they had progressed.
So sorry to hear you had this experience. I can assure you this is not the case at Walt Disney World. I would encourage you to ask for a supervising Cast Member if you should have any issues in the future.
I’m pretty certain that the cast member both informed you wrong AND did you wrong, Jennifer. The reason that I say that is that Disney, like almost all other companies, is not allowed to ask you what your disability/diagnosis is. They are allowed to ask what ACCOMMODATIONS you need, but not what your diagnosis is.
If you went up & just said that you have T1D, they might have said something like “I’m sorry… but what sort of assistance do you need?” Basically, you need to tell them what sort of assistance your require, not what sort of medical issue or disability you have.
If you ever encounter this again, ask to speak to the supervisor or area manager. 99% of the time, they’ll clear everything up, relatively fast.
My family of four visited Walt Disney World in August of 2010. At that time I was not aware of a DAS program. I was using pump therapy at that time and while in the parks, checking my blood sugars many more times a day than usual because of the increase of walking and eating more carbs than my usual daily diet, and also watching for dehydration due to the humidity and heat index. It would have been much more enjoyable and less stressful to have been able to use the DAS card, it is impossible to predict when a low glucose crash can happen, especially when you are not in your usual life-routine. I was looking forward to getting a DAS when at Disneyland in 2014, especially because of the length of the lines that week, although Easter in CA is not as intense weather wise as August in FL! One medical advancement I have recently been able get through my insurance is a CGM and it is instrumental in showing me not only blood sugar level every 5 minutes but also the trend it is moving, either up, down, or level. So I know any future vacations, anywhere, will be less stressful due to this device. Thank you for the advice to ask to speak to a supervisor next time we visit either park. When I asked in CA though I was pretty much told that under no circumstance was I going to get a DAS due to being a diabetic. I did tell them I would benefit from the accommodation of being able to return to a ride at a specific time. I left the Guest Relations feeling really stupid for even asking about it.
Hi. My daughter was diagnosed 6 weeks ago. I appreciate your insight.
Amy, it’s whole new world. I hope these tips help you and your family in some small way.
Thank you for the T1D awareness (It’s not from eating too much sugar!) When my 3 year old was diagnosed with T1D last fall, we were six weeks away from a pre-planned Disney trip. There was no way I was going to cancel, and we went and managed fine (even though we were still pre-pump and CGM). We do not let T1D keep us from doing things we want to do. My daughter is also Celiac and Disney is absolutely amazing with gluten free dining. It’s the only place we can eat normally. We can’t wait to go back. Next summer we are going on the Dream for the first time. If anyone knows about T1D and the DCL kids clubs, please let me know! My daughter will be 5.5.
Laura, I will be sailing DCL very soon and would be happy to pass along info. regarding sailing with T1D.
This is a mom who has it all together and what great tips for a more enjoyable vacation. Please don’t forget to thank her for packing double — great idea and always be prepared.
Thank you, Jeanne.
Great advice! All of these tips are also great for type 2’s. not all type 2’s need/use insulin, but the advice on frequent blood glucose checks and bringing plenty of supplies is an absolute must! I’m a type 2 who does use insulin, we went for our honeymoon in 2014 and had a wonderful time! And next time I’ll ask for a sharps box instead of bringing one!
Fantastic, Heather!